Living with Coeliac Disease

Coeliac disease;

Pronounced: See-lee-ak disease.

Definition: Bane of my life. Used to be.

I’ll save you the blow-by-blow account of my symptoms, diagnosis and recovery because there isn’t enough pages on the big wide web to document that traumatic journey.

But here’s my backstory in a few sentences.

I’ve been battling with this illness probably since the moment my teeny-tiny organs began to form in my mumma’s womb 23 years ago. I wasn’t diagnosed, however, with this condition until seven years ago.

I’m guessing probably only 20% of you reading this will know what coeliac disease is. How about if I told you I was gluten-free? Ahh, there goes the lightbulb and eye-roll. Let’s get one thing straight before I kick things off; I don’t choose to omit wheat, barley, rye and various other grains from my diet.

I have to.

Can you guess which one is gluten-free?

I feel stomach issues – including IBS, Crohn’s Disease, gas, constipation and many other conditions – have some kind of taboo around them. But why should they? We all have the same body parts and many of us suffer with similar symptoms but we’re forced to suffer in silence because of what? We’re simply too ashamed.

I’m not too sure where I’m going with this post if I’m honest. I have a mixture of feelings. I feel I should help people battling with coeliac disease understand their symptoms but, on the other hand, I feel angry that so many people CHOOSE to banish gluten from their diets out of pure ignorance.

However, I’m not a doctor nor am I a counsellor. But I do want to share my experiences and my journey in the hope that it can give other people battling with this condition some kind of relief.

Coeliac disease took over my life *note the past tense* long before I even knew I had it. I guess I realised something was seriously wrong when I collapsed just after my R.E exam in year 11. I hadn’t eaten for two days and my body and brain had reached breaking point.

My mum thought I was being bullied and was refusing to eat so I could lose weight. But that couldn’t have been further from the truth.

I had actually stopped eating because my stomach used to make these horrific noises (kind of like when it’s digesting food but 100 times louder) and I was anxious that it would kick off in the middle of my exams and not only disturb the rest of my year frantically trying to pass their GCSEs so they could get into college but also make me a total laughing stock.

But this condition didn’t just stop when it had claimed my mentality. Oh no, it most certainly carried on; eating away at my life, chunk by chunk.

I stopped staying at my friends’ houses, I wouldn’t go to birthday parties, I refused to attend college, I didn’t want to leave my house and the list goes on.

All of these issues and anxieties boiled down to the fact I was terrified my stomach would swell up – making me look a little under nine months pregnant – I’d feel sick, I’d have a pounding headache and I’d battle more mood swings in the next 12 hours than you have your entire life.

Those symptoms were getting worse by the day but I’d been battling with them for so long that they actually became the norm and I thought I’d have to learn to live with these for the rest of my life. I even ended up in hospital a handful of times.

I was eventually diagnosed with coeliac disease, saw a dietician and did loads of research. I can now pretty much live normally – whatever ‘normal’ actually means.

I’ve been there when someone has made you a gorgeous dinner and you turn round a say, ‘This looks delicious and I really want to eat it but actually I can’t because it’ll make me seriously ill.’ I’ve been there when friends arrange a meal out and you can’t go because there’s nothing you can eat on the menu. I’ve been there when someone gifts you a box of biscuits but you have to smile and say, ‘Thanks so much. I’ll open them later’ and actually give them to your mum.

It’s really hard at first but over time you’ll learn what ingredients you can and can’t eat. What beauty products you can’t put on your skin and what alcoholic beverages you shouldn’t be knocking back.

People always ask me if it’s hard turning down calorific treats and I always say no. Why? Because battling with a swollen stomach and not going to the toilet for a week isn’t worth the 2 seconds that gooey chocolate cake with Oreo biscuits sprinkled on top slips through my lips.

Although I feel I’ve finally got this disease under control, there are still times I have slip ups. I ate something a few weeks back and, although it was gluten-free, it had been on the same surface as bread and I got really quite sick from it. I was knocked down for about four days afterwards.

Here are some tips for any of you battling with coeliac disease

Always carry gluten-free snacks in your bag

Don’t eat something that will make you poorly just out of embarrassment